04 May 2013

Patient privacy

I attended a talk by author Salman Rushdie concerning the role of the novelist. He said that the novelist must remember above all that a novel is about individual people. Although people's lives are increasingly affected by abstract influences like political upheaval and globalization, only through the lens of a person's story can the novelist explore these trends and changes.

One of my favorite parts of being around patients is hearing their narratives, and there are many that I would like to recount through my blog. After all, medicine offers rich material for stories. Illness, death, and birth are replete with drama. Our reactions to these dramatic events give a window into our souls. And the story of people's illnesses are inextricably linked to societal influences: the veteran who is dying because of complications from Agent Orange exposure, the illegal immigrant who cannot obtain insurance, the young girl who receives a donated kidney. By exploring the individual stories of patients, we make sense of the human experience and also make sense of society.

The major issue I encounter is that my ethical, professional, and legal obligations disallow me from jeopardizing patient privacy. I sometimes protect patient privacy by altering or fabricating details of their cases, but I hate to do it because I perceive myself a sort of journalist, one who should strive for truthfulness and accuracy. And so, the more unique a patient's story, the more blandly I have to write about it, because I otherwise risk jeopardizing the patient's anonymity and confidentiality. Two of my favorite medical bloggers recounted powerful patient stories, and included details that were critical to the stories but which I thought might be personally identifying. On a hunch, I searched around the internet and determined the patients' names within minutes. This is no good. I want my blog to be so discreet that a patient who read my blog wouldn't think that a story was about them. I further insulate the people I discuss by keeping my identity and location anonymous.

Although I find myself wanting to write about my patients, I instead write about myself, about wider societal issues, and about news stories. I think it makes my blog less compelling, in the way that a history textbook is less compelling than a good novel. Nearly two years into my blog, I'm still experimenting with the medium.